--- In LANTERN@yahoogroups.com, Ana Palacios <flesteacher@y...> wrote:
> Hi and welcome to the group. I am pretty new myself but I have one
piece of advice that I can give you from my personal experience. "RUN
AS FAST AS YOU CAN away from that "doctor" whom you are seeing. There
is quite a bit of research out there regarding the failure rates of
RAST and skin testing. In fact, I just read an article where people
who had been stung by bees and were obviously having a reaction and
had the sting site on their skin to prove it, would go through some
sort of latent phase and test negative for the bee sting. I had a
doctor who was not as insulting as yours, but he told me that all of
my angioedema problems were caused by a hyperreactive immune system
(ok, true but..... He told me to get out of my head the notion that
something in the environment or that I ate was causing me to have
these allergic reactions. Like an idiot I kept eating bananas,
avocados, kiwis, etc because my reactions were all caused by an
autoimmune disease. I kept going to the store that sold
> new tires at the front of the store, though I would leave so ill
that I had to take medication in the car. Two months ago I found
someone who not only believed me but diagnosed me with NRL allergy. I
am now so sensitive to latex/rubber that I will go to a grocery store
and have a reaction because sometime during the day, balloons were
blown there.
>
> This is a sore subject with me but I will get off the soap box now.
Go to someone who is well informed and who will believe you. Your
life depends on it.
>
> Good luck.
>
> Ana
> helpinnh <helpinnh@y...> wrote:
> I have been suffering with severe symptoms to Latex allergy for
> years but was recently skin prick tested and it came back
negative.
> They also did the RAST blood test which I am waiting for the
results
> on. My Allergist has said that because his tests came back
negative
> I am not allergic and it must be in my head.
> I know from symptoms I have had that I am. Where do I go from here
> to get the help I need? I have so many questions about this
allergy
> and what to avoid etc. that I know I need some help

Hi, Ana!
I agree. Get a new doctor with experience in type 1 latex allergy.
Most of us have negative tests because the FDA has not approved the
extract for more accurate testing. There are many allergens in
gloves and you may need to try 20 different brands to find the one
you prick positive to. Regardless of test results you must avoid
latex and all cross reactors that have caused reactions for you. If
you don't your condition will advance to completely disabling. The
only exposure you should have is during testing. Latex allergy links
in the web has lots of great articles on testing, cross reactives
etc. My plan is to go to Canada for testing, they have a better
extract which includes more allergens and it's legal there. Johns
Hopkins did clinical trials with another extract that is supposed to
be 95% accurate (made by Greer Labs) but it still awaits FDA
approval. The RAST is 60% accurate as I recall and "a negative Rast
does not rule out Latex allergy". Latex allergy is diagnosed 90% by
history and 10% testing in this country. It is very poorly
understood by most doctors so find one with experience at a large
medical center that is knowledgable. Hang in there. It can take
years and even after you prick positive there will be doctors saying
you aren't allergic. Take care of you right now and avoid latex,
your body will calm down after a couple months. Avoid all
establishments that use powdered latex gloves too. Feel free to
contact me off list if you have particular questions. I've been
dealing with this for 7 months and making little progress with my
current doctors. You should start writing your medical history and
anectotal observations which may be relevant and are not in your
regular medical records so that it is ready for consultants. Also,
keep a diary of what you eat, what you wear, what your were doing
each day so you can identify possible triggers of your reactions. I
also take pictures of my face to show how symptoms progress. I hold
a note with date and time and take the picture of my face at the same
angle with the same lighting etc. it has helped to show the doctors
what they don't see when I'm not in the office and what happens
following my visits into latex rich environments. Hang in there! You
are certainly not alone, Heather in California
>
>
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